Displaying publications 1 - 20 of 25 in total

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  1. Isa SN, Aziz AA, Rahman AA, Ibrahim MI, Ibrahim WP, Mohamad N, et al.
    J Dev Behav Pediatr, 2013 May;34(4):262-8.
    PMID: 23538932 DOI: 10.1097/DBP.0b013e318287cdfe
    Caring for children with disabilities brings about a significant impact on the parents and families. The purposes of this study were to determine the impact of having children with disabilities on parents' health-related quality of life (HRQOL), family functioning, and total family impact and to identify the associated factors.
    Matched MeSH terms: Disabled Children/psychology*
  2. Mohd Nordin NA, Hui Shan E, Zanudin A
    PMID: 31888294 DOI: 10.3390/ijerph16245145
    The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child's condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.
    Matched MeSH terms: Disabled Children/psychology*
  3. Oei JL, Saugstad OD, Lui K, Wright IM, Smyth JP, Craven P, et al.
    Pediatrics, 2017 01;139(1).
    PMID: 28034908 DOI: 10.1542/peds.2016-1452
    BACKGROUND AND OBJECTIVES: Lower concentrations of oxygen (O2) (≤30%) are recommended for preterm resuscitation to avoid oxidative injury and cerebral ischemia. Effects on long-term outcomes are uncertain. We aimed to determine the effects of using room air (RA) or 100% O2 on the combined risk of death and disability at 2 years in infants <32 weeks' gestation.

    METHODS: A randomized, unmasked study designed to determine major disability and death at 2 years in infants <32 weeks' gestation after delivery room resuscitation was initiated with either RA or 100% O2 and which were adjusted to target pulse oximetry of 65% to 95% at 5 minutes and 85% to 95% until NICU admission.

    RESULTS: Of 6291 eligible patients, 292 were recruited and 287 (mean gestation: 28.9 weeks) were included in the analysis (RA: n = 144; 100% O2: n = 143). Recruitment ceased in June 2014, per the recommendations of the Data and Safety Monitoring Committee owing to loss of equipoise for the use of 100% O2. In non-prespecified analyses, infants <28 weeks who received RA resuscitation had higher hospital mortality (RA: 10 of 46 [22%]; than those given 100% O2: 3 of 54 [6%]; risk ratio: 3.9 [95% confidence interval: 1.1-13.4]; P = .01). Respiratory failure was the most common cause of death (n = 13).

    CONCLUSIONS: Using RA to initiate resuscitation was associated with an increased risk of death in infants <28 weeks' gestation. This study was not a prespecified analysis, and it was underpowered to address this post hoc hypothesis reliably. Additional data are needed.

    Matched MeSH terms: Disabled Children
  4. Isa SNI, Ishak I, Ab Rahman A, Mohd Saat NZ, Che Din N, Lubis SH, et al.
    Malays J Med Sci, 2021 Apr;28(2):128-141.
    PMID: 33958967 DOI: 10.21315/mjms2021.28.2.12
    Background: Quality of life (QoL) is an important aspect of well-being for the caregivers of children with disability, making it a noteworthy outcome. Little is known about the challenges faced by the caregivers in Asian countries and its association to their QoL. The purpose of this study was to examine a model describing the relationship between sociodemographic and disability-related factors on caregivers' QoL, mediated by the caregivers' psychosocial factors such as perceived stress, coping skills, and social support.

    Methods: A cross-sectional study was conducted involving caregivers of children with special needs in Kelantan, a state of Peninsular Malaysia. A total of 383 caregivers completed questionnaires measuring sociodemographics, disability-related factors, psychosocial factors and QoL outcome. Structural equation modelling was performed to examine the relations of the variables in the conceptual model.

    Results: In the final model, childcare dependency, caregiver's age, financial support, negative perception of stress and maladaptive coping skills were significant predictors of QoL (R
    2
    = 0.65). Caregiver's age had a direct effect on QoL, while financial support had an indirect effect on QoL via negative perception of stress. Childcare dependency had direct and indirect effects on QoL via negative perception of stress. Higher perceived stress was associated with lower QoL directly and indirectly via maladaptive coping skills. The final model fitted the data well (root mean square error of approximation [RMSEA] = 0.046; CFI = 0.923; χ2/df = 1.798).

    Conclusion: Intervention strategies to improve the QoL of caregivers should target the family unit and take into account the factors of child's disability, demographic and caregiver's psychosocial status.

    Matched MeSH terms: Disabled Children
  5. Khoo TB, Kassim AB, Omar MA, Hasnan N, Amin RM, Omar Z, et al.
    Disabil Rehabil, 2009;31(21):1753-61.
    PMID: 19479558 DOI: 10.1080/09638280902751964
    To determine the magnitude and impact of physical disability on Malaysian school-aged children between 7 and less than 18 years old.
    Matched MeSH terms: Disabled Children/statistics & numerical data*
  6. Hasan H, Abdul Aziz AF, Aljunid SM
    Health Soc Care Community, 2021 01;29(1):215-226.
    PMID: 33189086 DOI: 10.1111/hsc.13084
    The Community-Based Rehabilitation (CBR) services under the Malaysian Ministry of Women, Family and Community Development have provided two types of services for disabled children: centre-based and home-based care since 1984. A cross-sectional study was conducted among parents and caregivers with children receiving treatment at CBRs on the east coast of Peninsular Malaysia, to determine the level of satisfaction with the services provided. Respondents were recruited via multi-staged sampling, and simple randomisation at CBR level. Respondents self-administered the Physical Therapy Satisfaction Questionnaire (PTSQ) and provided sociodemographic data. A total of 297 respondents were recruited and all the questionnaires were returned complete, making the response rate 100%. Total satisfaction scores and factors influencing respondents' satisfaction for both groups were analysed. The mean total satisfaction score for centre-based and home-based were 84.69 (SD = 10.01) and 75.30 (SD = 12.23; t = 7.160, p ≤ .001) respectively. Ninety-eight per cent of centre-based and 89% of home-based respondents were satisfied with the current services. There were significantly mean differences in the satisfaction level of respondents of different states respectively (Kelantan mean 84.92 10.83, Terengganu mean 77.49 11.16 and Pahang mean 77.47 12.93, p ≤ .001). Factors associated with satisfaction were education (p = .002), occupation (p = <0.001), monthly income (p = .001) and source of income (p = .001). In conclusion, majority of parents and caregivers were satisfied with current services provided at CBR and satisfaction with services was dependent on CBR centre location and education and financial earning capacity.
    Matched MeSH terms: Disabled Children*
  7. Fabillah NSA, Mustapa N, Rohani MM, Esa R
    Ann Dent, 2015;22(1):15-20.
    MyJurnal
    Oral health literacy (OHL) is important in empowering people to improve their general and oral health. Carers’ OHL may be associated with their ability to deliver good oral healthcare to their children. The aim of this pilot study was to assess the OHL among carers of special needs children. This is a descriptive cross-sectional study of carers in four Community-Based Rehabilitation Centre. Data were collected through a structured face-to-face interview of 40 carers. Oral Health Literacy Malay Version (OHLI-M) was measured using text passages and prompts with a total of 57 items. These items were used to assess comprehension and numerical ability of carers based on domains namely, accessing dental care, understand appointment and following medication instructions. The results showed that majority of the participants had ‘marginal’ and ‘adequate’ OHL level of 32.5% and 52.5%, respectively. Only four (10%) participants had ‘inadequate’ OHL level. The ‘reading comprehension’ and ‘numeracy’ sections’ mean scores were 37.54 (95% CI 35.7-39.4) and 38.17 (95% CI 34.8-41.6). The total OHL mean score was 75.7 (95% CI 71.2-80.2). In conclusion, majority of the carers of special needs children in this sample had moderate OHL. Such information is important to develop more appropriate intervention programmes for carers to match their OHL.
    Matched MeSH terms: Disabled Children
  8. Lineker T, Ferlis B, Nurul Hudani Mohd N
    Previous researchers have shown that parents of children with physical disabilities have a higher risk of mental health problems that may be caused by significant challenges in raising children with disabilities. This challenge is compounded by the difficulty of living in rural areas. This study aimed to identify whether parents of children with physical disabilities experience Mixed Anxiety and Depression (MAD) and build a deep understanding of "why" parents experienced MAD. Material for this case study was obtained using the Kessler psychological stress scale (K-10) and in-depth interviews. Six parents who have MAD has been interviewed. Inductive content analysis with the help of computer program ATLAS.ti 7 has produced six symptoms of MAD among parents (sleep disturbance, irritable, anxious, easy crying, expecting something worse will happen, hopeless about the future) and five sources of MAD (lack of support, acceptance problems, lack of information and experience, the rural factor, child health problem). It can be concluded, this finding relates to the challenges faced by parents in raising children with physical disabilities in rural Sabah.
    Matched MeSH terms: Disabled Children
  9. Joginder Singh S, Diong ZZ, Mustaffa Kamal R
    Augment Altern Commun, 2020 06;36(2):107-117.
    PMID: 32706287 DOI: 10.1080/07434618.2020.1785547
    Teachers play an important role in the successful implementation of augmentative and alternative communication (AAC) for students with complex communication needs. The goal of this two-phase, mixed-methods study was to explore Malaysian teachers' use of, experience with, and perceptions about AAC. Phase 1 involved 252 teachers who completed a questionnaire that was aimed at collecting nationwide data about their use and overall perceptions of AAC. Phase 2 involved semi-structured interviews with 13 teachers who had experience supporting students who used AAC. Approximately half of the participants who completed the questionnaire knew about AAC and had used AAC with their students. Almost all of the participants had positive views of AAC though some misconceptions were reported. Most participants had limited knowledge about AAC that led them to experience difficulties supporting their students. Teachers were motivated to receive AAC-related training to enable them to use AAC more successfully with their students given the small number of SLPs in the country.
    Matched MeSH terms: Disabled Children/education*
  10. Abd Aziz N, Kadar M, Harun D, Mohd Rasdi HF
    Occup Ther Health Care, 2021 Apr;35(2):227-244.
    PMID: 33511894 DOI: 10.1080/07380577.2021.1876967
    This scoping review explores the implementation of video modeling (VM) by occupational therapists during the intervention process for children and adolescents with special needs. Four primary electronic databases were used to conduct the scoping review: PubMed, Scopus, CINAHL, and Proquest (Nursing and Allied Health). Research methodologies by Arksey and O'Malley were used as a framework to perform the review process. From the review, two themes emerged: (1) implementing VM by occupational therapists during the intervention process can successfully improve a client's desired skills; (2) VM can be applied through several types of technologies. The findings support occupational therapists' use of VM during interventions to positively enhance and promote desired skills among children and adolescents with special needs. Also, it can be incorporated into technological devices to suit a client's specific needs.
    Matched MeSH terms: Disabled Children/rehabilitation*
  11. Isa SN, Ishak I, Ab Rahman A, Mohd Saat NZ, Che Din N, Lubis SH, et al.
    Asian J Psychiatr, 2016 Oct;23:71-77.
    PMID: 27969083 DOI: 10.1016/j.ajp.2016.07.007
    Families caring for children with disabilities face particular challenges and demands compared to those caring for children without disabilities. Evidence suggests that there is considerable variation in how caregivers of children with disabilities adapt to their caregiving demands and stressors. The different adaptations to the children with disabilities may cause different impacts on the health and well-being of caregivers. This paper provides a brief overview of the literature on the impact of caring for children with disabilities on the health and quality of life of caregivers and the factors related to the health outcomes and quality of life. A literature search was conducted by using various electronic databases, including PsychINFO, ScienceDirect, ProQuest, and MEDLINE using specific key terms. Thirty-one articles published in peer-review journals from the last six years (2009-2014) were reviewed. Most of the studies were quantitative studies. Factors discussed that impact on caregivers' health and quality of life include the caregivers' sociodemographic background and child's disability-related factors. Several mediators and moderators including coping strategies, social support, parental stress, self-esteem and self-efficacy are described in this paper. This review highlighted the importance of these factors to better understand the complex nature of stress processes and the caregivers' adaptations to their children's disabilities.
    Matched MeSH terms: Disabled Children*
  12. Ismail A, Campbell MJ, Ibrahim HM, Jones GL
    PMID: 16813662
    Health Related Quality of Life (HRQoL) studies on children with chronic illness such as thalassaemia are limited. We conducted the first study to investigate if children with thalassaemia have a lower quality of life in the four dimensions as measured using the PedsQL 4.0 generic Scale Score: physical, emotional, social and role (school) functioning compared to the healthy controls allowing for age, gender, ethnicity and household income.
    Matched MeSH terms: Disabled Children/psychology*
  13. Olusanya BO, Gulati S, Berman BD, Hadders-Algra M, Williams AN, Smythe T, et al.
    Nat Med, 2023 May;29(5):1056-1060.
    PMID: 37055569 DOI: 10.1038/s41591-023-02291-x
    Matched MeSH terms: Disabled Children*
  14. Al-Abed A. Al-Abed, Rosnah Sutan, Sami A.R. Al - Dubai, Yassin Ibrahim, Syed M. Aljunid
    MyJurnal
    Falls are the most common injury causing death or long term disability particularly among children. This study aimed to identify the risk factors of the unintentional injuries due to falls in children aged less than five years in Yemen. This cross sectional study enrolled a total of 439 children under five years old from the emergency department of 6 hospitals in Sana'a city. Multistage sampling was used to select six hospitals from public and private sectors in Sana'a city. Face to face interviews were conducted by using a structured questionnaire. Simple logistic regression and multiple logistic regression were used in the analysis. The prevalence of falls among children under five years old was 21.2%. In the multivariate analysis, factors associated with falls among children were young mother (aOR= 0.9, 95% CI 0.81-0.91), working of mother (aOR= 4.5 95% CI 2.40-7.65), frequent family social gatherings (aOR= 2.7, 95% CI 1.54-4.61), number of children at home (aOR= 2.6, 95% CI 1.43-4.64), chewing khat by father (aOR= 2.4, 95% CI 1.38-4.10), presence of staircase in the house (aOR= 2.1, 95% CI 1.24-3.70), number of rooms at home (aOR= 2.2, 95% CI 1.17-3.99) and disabled children (aOR= 3.3, 95% CI 1.20-9.27). In the study, socio-economic and cultural factors such as family gathering and chewing khat were associated with home fall injury among children under 5 years old in Yemen. Health promotion program should take place to reduce the occurrence of fall injury.
    Matched MeSH terms: Disabled Children
  15. Tan SH
    Disabil Health J, 2015 Jul;8(3):414-23.
    PMID: 25595295 DOI: 10.1016/j.dhjo.2014.11.003
    BACKGROUND: Planning and evaluation of health care services for children with disabilities requires information on their caregivers' needs.
    OBJECTIVE: This paper aims to present the development and psychometric properties of the Caregiver Needs Scale (CNS), a scale assessing the needs of caregivers of children with disabilities aged 0-12 years in Malaysia.
    METHODS: Development of the scale went through a multistage process of literature review, modification of an existing instrument, input from experts and feedback from service users. Literature review identified content domains and response options. An exploratory factor analysis (EFA) was undertaken to identify subscales of caregiver needs. The internal consistency reliability, convergent validity and discriminant validity of the new scale were examined.
    RESULTS: 273 caregivers of children with disabilities completed the fielded questionnaire. EFA revealed 4 subscales of caregiver needs: need for 'Help getting information and services for the child,' 'Help coping with the child,' 'Help getting child care' and 'Help with finances.' Three items with factor loading <0.4 were dropped. Cronbach's alpha coefficients of the subscales ranged from 0.813 to 0.903. Total CNS score correlated with number of child's needs and unmet needs. The score was also higher in families with financial and employment problems.
    CONCLUSION: A new instrument was developed to assess the needs of caregivers of children with disabilities for use in the Malaysian population. The CNS showed satisfactory psychometric properties but further examination is warranted to confirm its validity.
    KEYWORDS: Caregivers; Children with disabilities; Instrument development; Needs assessment; Psychometric properties
    Matched MeSH terms: Disabled Children*
  16. Zamora MAL, Labao HC
    Enferm Clin, 2020 02;30 Suppl 1:120-123.
    PMID: 32115158 DOI: 10.1016/j.enfcli.2019.09.033
    The caregiver's role in rearing a child with disability requires huge physical demands which may lead to development of musculoskeletal disorders such as low back pain (LBP). This study aims to determine the factors associated with low back pain among caregivers of children with disability. A quantitative, correlational research design was used. Data were gathered among caregivers of children with disabilities enrolled in a specialized educational and pediatric rehabilitation unit in Valenzuela City. A personal information sheet was used to gather relevant demographic data while Oswestry Disability Index (ODI) was used to measure low back pain and disability. Pearson's correlation and Chi-square were used to determine the relationship and association among demographic factors and low back pain and disability. Majority of the respondents are mothers (59.09%) caring for children with autism spectrum disorder (31.82%), married (68.18%), and living in an extended family (36.36%). Chi-squared revealed a statistically significant association between caregivers' gender (p=0.003), relationship to child (p=0.000), and marital status (p=0.000) to low back pain and disability. Results imply that married mothers who are the primary caregivers to children with disability are prone to develop low back pain and disability. Preventive and restorative physical interventions, such as caring rotation, is recommended. Future studies should focus on other factors such as psychosocial, physical, and emotional aspects of low back pain and disability among caregivers of children with disability.
    Matched MeSH terms: Disabled Children*
  17. Global Burden of Disease Child and Adolescent Health Collaboration, Kassebaum N, Kyu HH, Zoeckler L, Olsen HE, Thomas K, et al.
    JAMA Pediatr, 2017 Jun 01;171(6):573-592.
    PMID: 28384795 DOI: 10.1001/jamapediatrics.2017.0250
    IMPORTANCE: Comprehensive and timely monitoring of disease burden in all age groups, including children and adolescents, is essential for improving population health.

    OBJECTIVE: To quantify and describe levels and trends of mortality and nonfatal health outcomes among children and adolescents from 1990 to 2015 to provide a framework for policy discussion.

    EVIDENCE REVIEW: Cause-specific mortality and nonfatal health outcomes were analyzed for 195 countries and territories by age group, sex, and year from 1990 to 2015 using standardized approaches for data processing and statistical modeling, with subsequent analysis of the findings to describe levels and trends across geography and time among children and adolescents 19 years or younger. A composite indicator of income, education, and fertility was developed (Socio-demographic Index [SDI]) for each geographic unit and year, which evaluates the historical association between SDI and health loss.

    FINDINGS: Global child and adolescent mortality decreased from 14.18 million (95% uncertainty interval [UI], 14.09 million to 14.28 million) deaths in 1990 to 7.26 million (95% UI, 7.14 million to 7.39 million) deaths in 2015, but progress has been unevenly distributed. Countries with a lower SDI had a larger proportion of mortality burden (75%) in 2015 than was the case in 1990 (61%). Most deaths in 2015 occurred in South Asia and sub-Saharan Africa. Global trends were driven by reductions in mortality owing to infectious, nutritional, and neonatal disorders, which in the aggregate led to a relative increase in the importance of noncommunicable diseases and injuries in explaining global disease burden. The absolute burden of disability in children and adolescents increased 4.3% (95% UI, 3.1%-5.6%) from 1990 to 2015, with much of the increase owing to population growth and improved survival for children and adolescents to older ages. Other than infectious conditions, many top causes of disability are associated with long-term sequelae of conditions present at birth (eg, neonatal disorders, congenital birth defects, and hemoglobinopathies) and complications of a variety of infections and nutritional deficiencies. Anemia, developmental intellectual disability, hearing loss, epilepsy, and vision loss are important contributors to childhood disability that can arise from multiple causes. Maternal and reproductive health remains a key cause of disease burden in adolescent females, especially in lower-SDI countries. In low-SDI countries, mortality is the primary driver of health loss for children and adolescents, whereas disability predominates in higher-SDI locations; the specific pattern of epidemiological transition varies across diseases and injuries.

    CONCLUSIONS AND RELEVANCE: Consistent international attention and investment have led to sustained improvements in causes of health loss among children and adolescents in many countries, although progress has been uneven. The persistence of infectious diseases in some countries, coupled with ongoing epidemiologic transition to injuries and noncommunicable diseases, require all countries to carefully evaluate and implement appropriate strategies to maximize the health of their children and adolescents and for the international community to carefully consider which elements of child and adolescent health should be monitored.

    Matched MeSH terms: Disabled Children/statistics & numerical data
  18. Sukeri S, Bakar RS, Othman A, Ibrahim MI
    J Taibah Univ Med Sci, 2017 Oct;12(5):424-429.
    PMID: 31435274 DOI: 10.1016/j.jtumed.2017.05.002
    Objectives: The present study aimed to determine the barriers that deter mothers of children with disabilities from attaining their unmet needs.

    Methods: In-depth interviews of 12 mothers of children with disabilities were conducted from November 2014 to January 2015 in Kelantan, Malaysia. The mothers were recruited by purposive sampling. Thematic analysis was used for identifying, analysing and reporting the data.

    Results: Barriers to the unmet needs among mothers of children with disabilities were found to stem from the mothers' expectation and further propagated by lack of support, the role of healthcare professionals in providing care, inappropriate policies and shortage of resources required for survival and maintaining care.

    Conclusions: Identification of the barriers to the attainment of unmet needs among mothers of disabled children is crucial for resolving the issue of unmet needs. Deeper understanding of these barriers may facilitate positive actions toward addressing the needs of these mothers and to alleviate the stress on mothers of disabled children. A concerted effort to coordinate services across all disciplines is required to dismantle these barriers by improving the provision of health care delivery and evaluation of welfare policies and services.
    Matched MeSH terms: Disabled Children
  19. Nyi, Nyi Naing, Zabidi Azhar Mohd Hussin, Nawaz Hussin, Menaga, M., Aw Linda, Raihan, S., et al.
    MyJurnal
    A sample of 204 handicapped children below 12 years of age consisting of 121(59.3%) males and 83 (40.7%) females who were classified into various types of mental and physical handicaps, were surveyed in April and May 1996. The majority of those with mental handicaps were Down Syndrome while those with cerebral palsy were the mostfrequent cause of physical handicaps. A structured questionnaire was used for interviewing the children parents to evaluate their attitude towards their handicapped children. The majority of the parents expressed their opinions that having handicapped children was not a burden to them although these children had to be given more attention. However, a significant minority felt that the child would be afinancial burden to the family and that he/she would restrict the social life of the family. The majority of the children were sent to school, as parents felt it was their duty to do so. For those children not attending school, the majority of parents felt that the children would not benefit by going. The others could not do so because offinancial constraints or because of the distance between home and school. For these children, provid-ing hostel facilities in a boarding school could be the answer. This study shows that parental love and support plays a major role in ensuring optimal growth and development of a handicapped child
    Matched MeSH terms: Disabled Children
  20. Suriati, S., Sharifah Zainiyah, S.Y., Lye, M.S., Norlijah, O.
    MyJurnal
    Caregivers may experience the need for information, social support, a range of services and financial support in caring for children with disabilities. However, some of these needs are unmet. This study aims to determine the perceived unmet needs among caregivers of children with disabilities at the Community-based Rehabilitation centre (CBR). A cross-sectional study was carried out among a total of 337 caregivers, who were recruited from 12 CBR centres in Selangor. The unmet needs were assessed using Family Needs Survey (FNS) questionnaire, which included six subscales of needs such as need for information, social support, community services, explaining to others, financial support and family functioning. Caregivers identified the need for information that the child might receive in the future as their greatest need (94.4%) and the least was the need for getting more counseling or help in getting a job (16.3%). The mean score for the overall unmet needs was 18.67 (SD=7.623). Out of six subscales of FNS, the need for information had the highest rating which was 98.3%, followed by need for social support (93.4%), need for community services (84.0%), need for financial support (79.9%), need for family functioning (61.8%) and need for explaining to others (46.2%). The unmet needs varied within the subscales. Therefore, more effective intervention programs are needed in community-based rehabilitation centres to match or reduce those varied unmet needs in order to allow caregivers to provide better care for their children with disabilities.
    Matched MeSH terms: Disabled Children
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